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The Tennessean

Health Department: meningitis not a risk: Meningitis not a risk to pregnant woman, after recent outbreaks in Middle TN.

Latest developments

91: official count of illnesses 32: official count of illnesses in Tennessee 23: states that received recalled medicine • CDC says potentially contaminated injections were given starting May 21. • Cases more than doubled in the last 24 hours in Michigan, from 8 to 20; Virginia from 11 to 18. • No new deaths reported • Saline solution, lidocaine and glycerin among products recalled from Massachusetts compounding lab. • Health officials find second type of fungus.

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Some patients possibly exposed to a contaminated batch of steroids say they are angry that they weren’t clearly told what was happening as a fungal meningitis outbreak unfolded in Tennessee.

Today, a week after news first broke of the outbreak that has now infected 91 people in nine states and caused seven deaths, officials at Saint Thomas have improved the communication process and are providing clearer details to patients and their families.

Ken Pierce, a Kentucky resident, said he received steroid epidurals at Saint Thomas Outpatient Neurosurgery Center on Aug. 31 and Sept. 14. Both were during the “window of concern,” when treatments may have been contaminated with Aspergillus or another common mold.

The facility called him twice — first on Sept. 25 to ask if the injections had helped and again a few days later to cancel an Oct. 2 appointment. Meningitis wasn’t mentioned either time.

It wasn’t until he saw a news article on Thursday that he put two-and-two together. “I said, ‘Uh-oh.’ ”

When a health scare of this scale emerges, officials endeavor to balance asking the right questions and providing information without alarming people unnecessarily. Sometimes, that process unfolds in a haphazard way. By nature, crisis means crucial decisions are made on the fly.

Pierce and all other potentially infected patients from Saint Thomas have now been mailed letters specifically mentioning meningitis and their potential risks. And the language used in phone calls to patients has been altered.

The key in all crisis situations, said Dr. Gerald Hickson, assistant vice chancellor for health affairs and director of Vanderbilt’s Center for Patient & Professional Advocacy, is to formulate an approach for clear communication and also acknowledge that “communication is a process; it’s not just one moment in time.”

First calls cautious

Saint Thomas voluntarily closed its neurosurgery center Sept. 20 and immediately began calling patients, said Rebecca Climer, chief communications officer at Saint Thomas Health Services. Callers initially targeted more than 150 patients treated on the same day as the patients who looked like they were going to be ill.

That call list expanded to 700 patients as the window for possible infection widened. Now it stands at just below 1,000 patients. As of Friday evening, Saint Thomas had attempted to contact everyone treated from July 5 to Sept. 20. There are still 31 people with whom they had not spoken from that time period, said Debra Schamberg with Saint Thomas Outpatient Neurosurgery: “We have attempted to call 2-3 times.” Teams also are still attempting to call those treated the first few days of July, she said.

Those making and taking phone calls at Saint Thomas work in groups of about six at a time, Climer said. Saint Thomas is receiving a number of calls from people who have had epidural steroid injections in other centers, including a Surgicare Center on the third floor of Saint Thomas Hospital, Schamberg said. The only center at Saint Thomas that received the tainted steroids was the ninth-floor Outpatient Neurosurgery Center, which is separate from either the hospital or the Surgicare Center that is also on the Saint Thomas campus.

The tone and content of the calls is different now than when the news broke initially.

With the investigation ongoing, those making the calls early on were instructed not to use the word meningitis in calls to patients, “because there are other conditions that we were concerned about,” said Dr. John Dreyzehner, Tennessee Department of Health commissioner.

Instead, calls advised, “We are checking on you following your recent injection to see if you are having any problems or issues. If you have any problems, give us a call,” Schamberg said. Privacy laws prevented callers from providing specific information on voice mail messages or with someone other than the patient, “so sometimes people don’t make the connection,” Climer said.

As a result, early calls came across more as a routine follow-up and not a cause for alarm, said Barbara Jenkins, whose husband, Richard, received epidural injections at Saint Thomas for back pain on Aug. 7, Aug. 21 and Sept. 11.

“We got a call one day and they wanted to know how Richard was doing after the last shot,” Jenkins recalled. “I said, ‘Not well. The shots were not successful, and he is going to have back surgery.’ (The caller said) ‘OK,’ and hung up.”

There was no mention of meningitis or the need to be alert to any symptoms, said Jenkins, of Hermitage. And, because of that, “I’m angry. I think as soon as they knew what was going on, they should have alerted the patients that they may be in danger.”

For others, the call came after meningitis already had appeared.

Eddie C. Lovelace — believed to be the state’s first fungal meningitis victim — died on Sept. 17. The first call from Saint Thomas came on Sept. 25, his widow, Joyce, said. The next day they called again, asking about his symptoms and sickness and whether an autopsy was planned. They never mentioned a fungal meningitis outbreak, she said. She read about it online.

“That right there has really floored the whole family,” Joyce said. “I don’t appreciate not being told about it.”

The guidance to not use the word meningitis in patient communication is not something “that we continued beyond that initial period,” Dreyzehner said.

A learning process

In crisis situations, experts say there are three rules to follow: Be prepared, be responsive and be honest.

“The biggest misconception that exists in the crisis world is there are so many crises you can’t prepare for,” said Nicole Cottrill, vice president of client services and business development at Seigenthaler Public Relations.

“Saint Thomas two weeks, two months, two years ago could not have guessed it would get supplies with Aspergillus in them. But the reality of health care is you rely on lots of outside companies for supplies and equipment, and there’s always a chance that that stuff will go bad.”

Still, some situations go beyond even the scope of projections.

At Saint Thomas, Climer said, “I don’t think anybody was prepared for this from a communication standpoint because it was so rare.”

Never before does Climer know of a time when the organization had to track down and contact so many patients. Nor has it faced a situation that has “changed and evolved as rapidly as this has. Every day there’s something new.

“…Our attempt has been to be as transparent and on the front of communication as we could possibly be,” Climer said. She added, “Anytime there is a situation like this, everybody’s learning.”

Now, they wait

For now, organizations like the Tennessee Department of Health and Saint Thomas work to keep the public informed through media briefings, emergency hotlines, patient phone calls and website updates. Still, potentially impacted patients sit and wait.

“I feel like I’m alone on an island, abandoned by those who treated me … waiting for a bomb to drop,” Pierce said.

While Barbara Jenkins may be angry about the initial phone call, she said she doesn’t blame Saint Thomas. It was more a flaw in the overall process.

Since then, she said, nurses and her husband’s doctor have been responsive. Her husband hasn’t shown symptoms “but we still have to be diligent and watch.”

As for Richard Jenkins, 81, a retired juvenile court judge, he’s apprehensive, but “I am not crawling off in a hole anywhere.”

He has just one regret: “I wish I had known about it sooner, rather than reading it in the paper.”